Cancer meds unavailable

I cannot get the cancer meds I’ve been prescribed. When I went to pick up my monthly prescription two days ago the pharmacist told me that he has been unable to get any Bicalutamide tablets for the last 3 weeks. When I tried again the following day he’d still not been able to source any.

I’ve been on Bicalutamide, which are hormone therapy tablets for prostate cancer, for almost 3 years and have to take a 150mg dose once a day, every day. They are helping to keep me alive and are something I need. I do not keep a hoard but get them as I need them, so I have no back up supply.

My cancer is the most common cancer amongst men in the UK with over 47,000 of us being diagnosed with it every year in this country alone and Bicalutamide is one of the main drug medications used to control it. I searched online and found the “shortage” started about a month ago, not just of the pills I have to take but of around 100 different drugs that treat prostate cancer, breast cancer and mental health conditions, so there must be thousands of us affected by this.

From what I’ve read (click here), the “shortage” looks like it’s been caused deliberately. The drug companies want more money but the UK Government or NHS England, or whoever it is that orders drugs for our NHS, says either there isn’t any more or they’re not prepared to pay the price. Meanwhile those of us who depend on our meds to keep us alive or functioning normally physically or mentally are stuck in the middle.

I don’t know the rights and wrongs, the why and the wherefore, I depend and rely on others to ensure our NHS is properly resourced, in this case with drugs, but it feels to me like someone high up isn’t doing their job properly. Whatever the reasons, it should never have got to the stage where patients are used as pawns and medicines become unavailable.

I saw my oncologist just last Wednesday before I knew of the “shortage” and, when I asked, was told I definitely cannot have a break from treatment (my cancer is not a well behaved one). Maybe the couple of days I’ve not had my meds so far won’t make a difference to me, I honestly don’t know, but I have no idea how long it will be before I can get the pills and this enforced break is causing me great stress and anxiety, which is exactly what I’m told i should be avoiding.

This should not be happening!

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New Year 2018

As I’ve not posted for the last three months I thought it was time for an update. There have been things happening but, in a nutshell, it’s like being in the eye of a storm right now with the anticipation of what’s to come being worse than what’s actually going on.

I got my latest PSA result between Christmas and New Year and, for the third test in a row, it’s more or less doubled every three months since April 2017 and now stands at 0.417, almost 2½ times higher than the previous 0.176 just 3 months ago and almost 10 times higher than the 0.044 back in April. It is still low, but then it should be after the surgery, radiotherapy, hormone therapy and chemotherapy I’ve had over the last four years.

Because of the two previous results the rate of increase didn’t come as a surprise to me so no reason to feel shocked, except nobody told my head that so, by New Year’s Eve, the potential of it hit me and I felt a mixture of gutted, upset and fearful of what’s to come. The time of year could have had something to do with my frame of mind, Christmas and New Year evoke lots of memories after all, but so could the hormone therapy, which is notorious for inducing mood swings in men (I don’t watch sloppy movies in company these days). I started to get maudlin and wondering how many more New Year’s Eves I’d be having so it was probably just as well I didn’t have a party to go to as I would have been lousy company.

I’d also had a CT Scan a couple of weeks before the PSA test and that had shown no visible spread of the cancer but when that positive thought floated into my brain it didn’t stand a chance of taking root with the way I was feeling and instead I started counting how many treatments I’d used up and how many I had left.

It was with that in mind that I went for my hospital appointment today, which wasn’t as bad as I’d imagined it might be. My oncologist expects my PSA to continue to rise and estimated it’d be back into whole numbers by my next appointment in April but generally isn’t too concerned. For now she is going to leave my current treatment as it is as the objective she has is to eke out its effects, and those of my future treatments, as much as possible. I’m not out of treatments yet but there aren’t that many left so it makes sense to get the most out of each one.

I asked why I’m staying on Bicalutamide as, despite taking it, my PSA is still going up and the reason is that, if I were to stop, my PSA would rise even faster.

I also asked if I’d be able to have more Docetaxel chemotherapy in the future and the answer is no as all you get are the side effects but with no known benefit. However, there is a different chemo drug, Cabazitaxel, that I could have. I’ve read it adds around 2½ months on average to lifespan, not as much as Docetaxel but every extra day is worth grabbing, so definitely not to be sniffed at! When I’ve exhausted all the regular treatments I’ll then be put on clinical trials and one she mentioned was an Immunotherapy drug trial. I wish I’d written the name down but, still, it’s good to know that’s another possibility to try even if I can’t remember what it’s called.

Happy New Year.

Addendum – Since publishing this post I have found out the name of immunotherapy drug in the Trial that I mentioned above. It’s Rucaparib.

Getting run over by a bus

Déjà vu. I’m knackered – apologies to regular readers who must be bored stiff reading how tired I am but imagine how bloody debilitating and restricting the fatigue is, especially when in your head you’re still 18 and there’s so much you want to do but your body says “no way José”. Luckily I still have days, and sometimes even whole weeks, when I can do the stuff I want to do before the fatigue (and all that goes with it) kicks back in.

In addition to the fatigue there are also a few other things going on that are a nuisance, not least my scrotal hydroceles. Just a year ago I wouldn’t have known what they were but, as I’ve mentioned in previous posts, cancer is like a course where you’re always learning something new and given the choice I’d rather go on learning new stuff than graduate because the awards ceremony gets a tad hot and I won’t get to go to the party afterwards.

In everyday (polite) language, scrotal hydroceles translates to swollen balls. Mine vary in size from day to day and, depending on who you speak to, they’re either something that might have happened anyway or they’re caused by one or more of the treatments I’ve had, although opinions vary on exactly which as it could have been any of them. On its own the discomfort, skin irritation and occasional pain from the swollen scrote would be bearable but, add them to the man-boobs, the flabby midriff, the loss of body hair, the gritty eyes, the occasional hot flush, unpredictable waterworks and dodgy bowels, not to mention the numbness and pain in my left leg that is causing me to limp, for some reason the big balls are a side effect too far and are really pissing me off.

What really should be pissing me off though, is that my PSA has risen from its post-chemo lowest ever level of 0.044 just six months ago to 0.176 now. It’s still very low but is obviously going in the wrong direction and at a quickening pace so, sometime in the not too distant future I’ll be going on to more treatment, which my oncologist (who I saw today) says is likely to be Abiraterone with prednisolone or, possibly, Enzalutamide. I asked her if my prognosis had changed as a result of the chemo but it looks like it hasn’t. On the bright side at least it’s no worse.

Before starting chemo I read that it could slow the cancer down by between 10 and 22 months and it’s done that, but I optimistically assumed I’d be towards the top end of the bracket. My cancer, though, had other ideas and went for the bottom end, thereby living up to its reputation of being very badly behaved or, as I prefer to call it, a right bastard. I seem to want to swear a lot more lately.

With everything that’s been happening I’ve been having lots of soul-searching moments where I ask myself if I would choose the same treatments again and, when I’m thinking rationally, I have no doubt I would because without them I’d probably be either very ill now or very dead so, for me, it’s a no brainer. When I’m thinking less rationally though, which is usually when I’m feeling down, I think the opposite but, really, the only treatment I wish I hadn’t had was surgery, not because having your prostate removed is never a good idea (for many men it is) but because if it had been known beforehand how far my cancer had already spread then I doubt surgery would have been offered to me. I made the best decision I could have at the time but if there’s a moral there it’s the one that says you should never believe scans are foolproof.

My soul searching moments inevitably end up with me wondering how long I’ve got left, which I really don’t like at all because I start counting Christmases and, based on my unchanged prognosis, it comes to a grand total of 4 or 5. Nevertheless I remain determined to prove my doctor wrong! I reckon she’d like it if I did.

Others tell me that we’re all going to die and that any one of us could get run over by a bus, which is true, but no help at all. Take my word for it, the prospect of getting run over by that proverbial bus doesn’t hang over you in the same way. At least the bus might miss me but the bloody cancer won’t.

Last minute deals to idyllic Santa Canceraos

A major British cancer charity currently has sponsored adverts popping up on Facebook where individuals post photos of themselves the way they are right now. Everyone looks so happy and healthy and they're all thoroughly enjoying themselves. You could be forgiven for thinking you were looking at some glossy holiday brochure trying to persuade you of the delights of the Hotel Chemoterapia in the idyllic little resort of Santa Canceraos on the secluded island of Oncologia set in the azure waters of the Radiologica Sea. Honestly, I'd be tempted to book if I hadn't already been and found that the brochure was, how shall I put this, not entirely factual.

As is usual with Facebook posts, other individuals post comments and one post in particular pee’ed me off. I know the person posting would have meant well but, FFS, cancer ain't school and we don't need reports to take home to our mums. It read: “A shining example to all others suffering from cancer well done”.

“Shining example”!! “Well done” !!! $€£@#$%&! (That’s me cursing politely).

I feel inadequate, like I failed the class.

In fairness, the comment was about a woman who'd climbed a mountain a year after starting chemo but, come on, how many of us could do that? It's great that some can but it's no more than that one guest amongst many at the bug infested Hotel Chemoterapia who gets the spotless room with the clean sheets when everyone else goes home ill and covered in bites.

Now I probably wouldn't feel as sensitive about this if I wasn't feeling so drained right now. I have done for weeks. The pills I'm on must have started having more of an effect on me because I'm even more drained than usual. It's not that I'm permanently slumped in an armchair, I do still get on with things and I even have days when I'm out and about, but no way do those things include climbing a @#$ing mountain. One day this week I felt good so we went out and I've paid for it ever since.

I realise charities have to try to raise money so they can do the work they do, and this particular charity does amazing work. But, please, while you're showing what great results research can bring and how your particular charity is at the forefront of research (and it is!), can you think about the issues these money raising initiatives can raise along with the money and please don't forget that there are still a helluva lot of us who are bringing up the rear.

p.s. If a place such as the Hotel Chemoterapia in the idyllic little resort of Santa Canceraos on the secluded island of Oncologia set in the azure waters of the Radiologica Sea exists anywhere, please may I refer you to my Disclaimer

Frankly, my dear, I’m shagged out

We just had a great couple of weeks in Spain, on the beach and in the sea every day. It was warm to hot, mostly dry, very sunny and, as always, full of friendly people, both locals and tourists, especially our mates who we now regularly meet up with. As you’ve probably gathered, we like the place.

The only downside was nothing to do with the actual holiday but everything to do with my energy levels, which were noticeably down on a year ago. Last September’s short break doesn’t count as I was in the midst of chemo then but, whereas in June last year we walked everywhere, this year I needed to take several cabs and I just wasn’t up to much after eating in the evening. I could easily have slumped into bed as soon as the sun went down. If I was in any doubt about feeling more tired before before I went away, those doubts are now gone.

Now, I don’t know if this is all down to the post-chemo malaise that I’ve been told can last for ages or if it’s something more permanent but it’s yet one more chip away from the “old normal” that existed until not that long ago.

I’ve had it suggested to me that this could all be down to getting older (bloody cheek!). OK, it could be, but does such age-related change come so suddenly? When I look at others my age and a little older I don’t see them flaking out but I do see them walking, partying and, if not full of energy, certainly not totally depleted of it.

Since getting back home a week ago I’ve felt even more drained. I think I’ve got a virus added to the already present fatigue but I’m plodding on making sure I keep active although I’ve had to cut out the gym. I find myself wondering what idiot said holidays are good for you? 

As if all that were not enough, my PSA blood test was due. As anybody who has to have regular PSA tests knows there’s something called PSA Anxiety. It goes hand in hand with Scanxiety and both can drive you mad. I managed not to think about it while we were in Spain but it’s been on my mind ever since the plane home touched down with me swinging from being convinced that the cancer is dormant and will be so for some time to the PSA result coming back sky high and the cancer being rampant everywhere – not just once have I gone through this but a hundred times in the last few days. I know it’s daft, but there you go. 

I finally had my bloods done yesterday and today I got the results. The bad news is the PSA has gone up but the good news is it’s still very low and now stands at 0.074 compared to the even lower 0.044 that it was 3 months ago. I’d hoped it wouldn’t rise again for a bit longer but it could be worse I suppose. 

The other thing that my bloods threw up was my neutrophils level, which is low at 1.5. I don’t altogether understand neutrophils but I think they’ve got something to do with the body’s immune system and help to fight infections and they should be higher than 1.5, so maybe that could account for me feeling like crap? 

To paraphrase Rhett Butler in Gone With The Wind: Frankly, my dear, I’m shagged out – but not, unfortunately, in the way I used to be pre-surgery.  Nevertheless I have plans for the next few days that I intend sticking to. An elderly friend of ours who we all affectionately call Uncle Albert reaches a milestone birthday on Thursday and is having a celebration get together. As befits his advanced years there’ll be plenty of seats available so I should be OK. In fact, sitting next to him I will appear positively youthful. 

Ahead of the game

A few times since I’ve been part of all this cancer stuff I’ve had doctors and other healthcare workers ask if I have any support. I always assume they mean support from family, friends and maybe even neighbours or formal support groups, so I’ve always replied yes, since I’m lucky and have all that. Some people with cancer have only themselves and I cannot imagine how difficult it must be for them to cope alone because, even when you’ve got support, it can be very hard, especially when you’re trying to get through treatment.

But there’s one source of support that I bet no doctor or nurse has ever thought I might have when they ask, and that’s my Trade Union. Although I’m now retired I remain a member of ASLEF, which is the train drivers’ union. I was still working when I got diagnosed and from that moment on ASLEF has been there, which was not a surprise to me since they had been there for me since the day I started on the Railway, just as they are for all members. They’ve supported not just me through all the tribulations that cancer brings but my partner, too, when other organisations that you’d have expected to help have done either nothing at all or, even worse, have done the exact opposite of help. 

Why am I writing about this now? Well, recently I was asked by someone who works in my union’s Equalities department if I’d like to come to our annual conference to tell my prostate cancer story. It wouldn’t be fair to name names on here when the person isn’t a public figure, but she knows who she is. She’s well and truly on the ball and does a great job and on this occasion she’s excelled herself, as I hope to explain.

I’ve had a few articles about prostate cancer published in my union’s monthly magazine over the last few years to try to raise awareness of the disease. This would be important in any union but particularly so in a union such as mine since it is still predominantly male and, with prostate cancer being the most common cancer amongst men in the UK, our membership stands a disproportionate chance of being affected, so really needs to be aware.

To be honest, when I was asked, I thought: how am I going to do this? I’m fine talking people to death when I’m part of a small group (you can’t shut me up) but I am not a natural public speaker who likes being on a stage, with all eyes on him. In fact, the thought petrifies me but, to be offered a platform where I might reach a large number of men who were likely to be as oblivious to prostate cancer as I had once been and to get them to consider having a PSA test, which I’d also once known nothing about, was an opportunity too good to turn down, so I found myself saying yes.

As unions go, mine is not massive with 20,000 members, and our annual conference reflects our size. What we lack in numbers, though, we more than make up for in mutual support not just amongst each other but also amongst those who are employed by the union and that was patently evident at our Annual Assembly of Delegates, as our conference is referred to.

We elect the people who run the union for us and have exceeded ourselves in the choices we’ve made in recent years by putting in place a progressive Executive Committee and a cutting edge General Secretary who all see the importance of ensuring members are aware of a range of issues, including those such as prostate cancer, something that can fundamentally change a man’s life but, potentially, could kill him, too.

There were around 80 male delegates at the conference and, on the day I was to speak, my union had paid for two prostate cancer charities to be there to provide PSA tests – one called Tackle and the other called the Graham Fulford Trust

I sat at the back and observed the conference for a couple of hours and then it came to my turn. I heard my name announced and felt my legs turn to jelly as I stood up but somehow I made it to the lectern; divine intervention perhaps? I had my notes with me so that I didn’t just dry up – I know I was telling my story but it’s amazing how forgetful you can be when you’re nervous and having chemo-brain doesn’t help matters. Besides, it’s one thing writing down all the most intimate and personal effects that prostate cancer chucks at you and posting it on a blog for all the world to see, but it’s quite another standing up at a conference for the first time in your life and saying it out loud and making it relevant. And I did tell all, because why hold back? We, as men, need to be open about these things because keeping silent helps no one, least of all ourselves.

I think I must have got all my speech out, although I know I faltered a few times as much from emotion as nerves, because suddenly all these people were standing up and clapping. That was unexpected and felt great but, what was even better, much much better in fact, 56 of the men there rushed off and spent their lunch break and then their afternoon break as well, queuing up to get their PSA blood tests done.

Some of the men came up and spoke to me and said they’d vaguely heard of prostate cancer but until they listened to my story they hadn’t really known what it was, what it could mean and what it might do. They also hadn’t known there was any sort of a test for it. 

I have heard all the arguments for not having a national prostate cancer screening programme (and the awareness raising programme that would go with it) but, as someone with this bloody awful disease, I’m not convinced by them. Keeping half the population in the dark about a cancer that can kill them if it’s not found and treated early doesn’t strike me as a sensible way of promoting good health but is a very good cost-saving exercise.

I hope that none of my 56 colleagues who were tested have any reason to be followed up but, if they do, I’m glad that my trade union and the two charities involved might have ensured that, if they have cancer, it has been found early and, therefore, can still be cured. 

Whatever their results, they have the woman in the Equalities department to thank for starting the ball rolling. We all help each other and I’m proud to be part of this union.

Twenty weeks post-Chemo 

I saw my oncologist today and at the risk of tempting fate I’m pleased to report I’m doing fine. My latest PSA result has shown a small but welcome drop, taking me to yet another record low. Three months ago it was 0.049, today it’s 0.044. The 5 months of chemo that I finished back in November hit me hard but, as the drop in my PSA shows, it hit the cancer even harder although not enough to deliver it a death blow, meaning the bugger will be back eventually.

I have a few lingering chemo side effects which, although not major, are uncomfortable and annoying. There are a couple of intimate ones that involve fluid and swelling and make me look very well endowed on occasions (even more than usual!). I also have blocked eye ducts that stop my eyes from draining so, instead, they water a lot but despite watering they still feel like there are lumps of coal in them. Going to the gym has helped me regain a lot of my strength and stamina, but I still get drained very easily and it takes a few days to recover from a night out.

On the plus side the fluid retention that had puffed up my face and the rest of my body has now mostly gone. I didn’t realise quite how much chemo had changed my appearance until my partner and my Macmillan nurse mentioned it just a couple of weeks ago. It turns out they both hadn’t recognised me on some occasions but didn’t like to say at the time. 

So, for now, I just carry on taking the tablets and getting on with life. My next blood test is in 3 months.

Inside Health, Prostate Cancer

This radio programme from the BBC, called “Inside Health, Prostate Cancer” is worth a listen. Click on this link: http://www.bbc.co.uk/programmes/b086s7jr

I think it’ll be especially useful for anyone about to have any prostate investigations done or who is currently having them, but it’ll be informative to anyone with an interest in prostate cancer for any reason.

The programme was first broadcast on 4th January 2017 and should be available for a while.

If you’re outside the UK and BBC iPlayer won’t let you access the programme, try the Apple Podcasts app or one of the many other radio or podcast apps. 

Good news 

I had my first post-chemo blood test yesterday and got the results today. They’re good, excellent in fact, with my PSA now at less than one tenth of what it was six months ago. It now stands at 0.049, yet another record low. I’ve got used to walking out of the hospital feeling quite anxious and down but today was very different, I left on a real high.

I don’t know how long my low level of PSA will last and as great as it feels I don’t want to tempt providence. I’ve had my hopes dashed too many times since I was diagnosed just over three years ago to pretend that this welcome situation is permanent. It might be but it might not and, disappointingly, there’s more chance that the PSA will eventually start to rise again at some point. It could go down, too, and might even reach that elusive 0.003 or less that was supposed to have happened after the surgery. That would be marvellous!

For now I’ll be resuming my life and, as the oncologist said, start living with the cancer instead of dying from it. As a start I’ll be dragging myself back to the gym on Friday, the first step in an effort to lose that 20 kilos I mentioned in my last post and all part of my pre-holiday preparations. It’ll soon be summer (not soon enough!) and I need to look gorgeous for the beach, a long shot but you never know. España watch out.